So I went to my homeland in May, which I have never actually called home although I lived there for about 6 months, that I can remember, of my life(but that's another story).
I visited two friends who are both working on communitary projects around art, hiv, and aids. Cepa in Tlaxcala founded by Beto Pérez, and Entre Sures organized by Eli Moon and Shaunak. Both projects share many aspects of the HIV communitary work I do here in Brussels.
Cepa was founded in 2022 in Tlaxcala Mexico and it serves, for a community of people living with HIV, as a meeting place, “es también un aula autogestiva de conocimiento comunitario para hablar entre pares de virus, cuerpx y salud” is also a self-managed classroom of community knowledge to talk among peers about viruses, body and health. A space for and by people living with HIV to make art together, talk, share space, and take back the narrative of our lived experiences. It is located near the local HIV clinic, which is also where Beto and Jorge Bordello, his husband, do outreach specifically for the Cepa meetups.
Entre Sures is a curatorial project born in 2022 as well, which focuses its work on sexual health, race and kinships across the global south. The project’s most recent exhibition VIHDAS PROHIVIDAS de historia memorias y testimonios (Forbidden LHIVes of history memoirs and testimonies - however in spanish there’s a play on words that would translate to PRO HIV LIVES) focused on artists living with HIV and their expertise as people living with HIV. This included a whole week of workshops, talks, and video projections centering the lived experience of people living with HIV in Mexico City.
I have recently been part of two projects, which, if you follow my adventures, you may already know about: The Aids Archives and Arts Assemblies in Belgium (2023-2024, conceived between 2022-2023 by Castillo and Thalia and then with me in 2023) and I was part of the Write It Out! fellowship program (kicked off in 2021 during the covid pandemic by Play writer Donja R. Love), I was part of the 2024 cohort. What all these projects have in common is the auto managed, for and by people living with HIV, and intimacy/visibility dialogues through which they center their work. From Belgium to New York and now Mexico, I am slowly connecting the dots of those projects that seem the most relevant to my work, my style, but most importantly my values as a poz artist. While there are other exciting projects on the horizon (see below for more details), I have yet to fully participate or collaborate with these specifically and hope to soon connect with them in one way or another.
While some of these projects are in part supported by institutions small and large, HIV focused and not, there's some consistency in how these projects are organized. Some of these consistent characteristics are their “for and by” aspect and the intimacy required to produce such programs. This allows for more profound exchanges, honest moments between peers with no fear of being outed, or judged. These networks act as an intimate sounding board for people who would otherwise be hushed, outnumbered, or hidden.
For over 5 years I lived with my status and kept it to myself, it took me then another 5 to speak out about my status and gain confidence when speaking about it to friends, and unknown encounters. I was seldom met with violent reactions, however when they happened, the shame and guilt took over all of my senses. The isolation I experienced over these years made me appreciate “for and by” or non-mixed spaces. Where we could talk about medication rituals, laugh about how we thought we were going to die, about how some of us almost did die, spaces where we could cry together and experience no pushback from someone who would not understand and ask too many questions to try to get a glimpse at our suffering.
While the institutions we have been collaborating with have been accommodating (to put it nicely) and helped with the intimacy and non disclosure, the choice not to publish 100% of what we do – as people living with HIV– with their money, was more than a conversation. Negotiating and explaining the why’s and the how’s and the request for the most basic respect that was required to respond to our participants' needs has been tiring.
One day, I asked myself the question: why have these projects all of a sudden emerged across the globe, and around the same time? As we did with the Aids archives project, they grew out as a response to a twisted rhetoric that made noise five years ago and continued to make ripples even in the heterosexual world. In 2021, during the Covid19 pandemic, some arts and cultural institutions across the globe took part in a celebration of the 40 year anniversary of the HIV Pandemic outbreak in the US. This took shape as various exhibitions, paired with panel talks, publications and curatorial projects around HIV inviting artists both dead and alive, poz and not, whose work was about HIV and its awareness. (see below for a noncomprehensive list)
The aforementioned projects I’ve been part of were organized out of a response to an institutional attempt at co-opting our narratives sometimes without the community in question. The narratives of transfagdykes living and working with HIV, undocumented people living with HIV, sexworkers, aids workers and caretakers. The arts and cultural noise of 2020 echoed lies about the eradication of the virus, how we are all more visible and living happier lives than ever before, pushing forth a rhetoric true only about a few. The noise didn’t cover the full facet of realities we live today. These projects emerged as a reaction, and as a protest against claims that the fight against HIV and aids is over. We continue to fight for our siblings who have little to no access to medical aid, those who are marginalized, those who are shamed, pushed to the sidelines and hushed.
Why is it important to keep talking about HIV in 2025 (and not just in December)?
We are taking charge of our stories, creating the mythology that will save siblings in the future. No cis white man will tell my story for me by taking my work and archiving it in the basement of an institution somewhere in the western world. We are here to produce and share knowledge, tools, and experiences. The spaces we create and the work we do deepens our cultural ties to the history we lost with the many generations that have died of aids since the 80s. This is only part of our legacy and heritage as transfagdykes, disabled people, immigrants and sexworkers. We continue to talk about HIV today because we are still living with HIV and still dying of aids.
The stigma that has guilted many of us into isolation is still rampant. The shame that this brings to anyone contracting the virus has not gone away with big pharma and advancements in preventative and antiretroviral medicine. Not in Belgium, not in the US, not in Italy, not in Mexico, not in India nor Japan. Our bodies are subject to toxic levels of medicine on a daily basis, but this is yet another story.
While I was in Mexico, my friend Eli Moon invited me to an exhibition opening. It was a solo show of an artist who contracted HIV in 2018 and decided to make his artwork only about this in the following years. What resulted was a show, in one of the bougiest neighborhoods of Mexico City, Polanco. I can only explain how it made me feel.
My husband and I arrived at the gallery before Eli, and decided to stroll in and take a peek at the show. You can imagine it easily, a classic small white walled private gallery, pristine, with a spread of paintings hung on the walls, and a large sculpture made from medicine bottles in the center. Caterers passing around with amuse bouches and wine, white Mexicans everywhere. Not a single faggot in sight. I did not feel welcome. However, I was curious and wanted to learn about this artist. Eventually I wanted to meet him and discuss his experience with him because as people living with HIV, these peer to peer interactions don’t come easy, especially showing a body of work dedicated to the transition of contracting HIV and living with it. However, I quickly rescinded any desire to meet or even talk to this artist. The paintings invoked a sense of panic, I wanted to run away as quickly as possible and hide.
The paintings were grotesque and somber. Mind you, I love grotesque art, and somber aesthetics can have beautiful qualities. These paintings were a sort of apology and a presentation of shame and disgust. There were heavy undertones of christianity, family values, lust as negative, and blame. When talking to a friend about this exhibition, their response was intriguing. They made a comment (and I am paraphrasing here) about the story portrayed being clearly catholic and reminiscent of classic addiction rehab programs. I inferred that I was completely unaware of this and thus had a different point of view. While this is all fine and dandy, these undertones of addiction completely flew over me. However, the evident narrative of repentance struck me. My focus was on the shame and guilt that resurfaced in me, someone who has lived through this exact experience, being Mexican and all, I felt like I should have been able to connect and empathise more with this artist. However, the act of reproaching oneself and seeing the error of one’s wrongdoing does not do it for me.
His name is Alfonso Alfaro, the exhibition was titled Manual Para No Repetirlo (Handbook For Not Repeating it) which refers to a very low point in his life. I guess it culminated in the contraction of the virus and thus this entire cathartic moment in his life; I’m not being reductive, it’s just unclear if his lowest point was because of HIV and the isolation he felt, or addiction which then led to depression, or a mix of both etc. His intention was indeed to make an emotional connection and impact with his viewers through three stages of this transition. I believe that in this regard he was completely successful. However, the posture through which this connection was made is purely based on his access and class status. Which were neither acknowledged nor present in the exhibition booklet where he explains his work a bit further. Thus, connecting only with a few and thus, in my opinion, pushing forth a narrative which is heavily biased and critically skewed. I say pushing forth because of the clear privilege he could take advantage of (environment, the support of his family, and access to treatment etc). Much of which many people living with HIV today simply do not have. I think I can count, with one hand, the number of artists in my surroundings that are openly working in the arts as people living with HIV and having a platform as huge as any art institution in the western world, to display a specific lived experience.
While I can acknowledge his courage, I also think it could be more interesting to work with the community which is a strong community of people who are sick of being hushed. His work was uninviting to the HIV community, it allowed for a seemingly heterosexual public to spectate a guilt trip and public apology to his family. In my opinion, the work was direct and to the point, however, bland. There was no nuance of anything other than heteronormalcy and complacence to a deeply religious narrative. I didn’t feel any connection nor desire to connect, unfortunately.
Who am I to say anything about Alfonso’s work?
Well, I do strive to work with communities, and am working on making links with as many communities I can, of people living with HIV. I believe this work is important, and deeply care about what is published and shown about me and others living with HIV. I wish to connect with my peers and discuss how our work should not be reduced to our suffering. Our lives and experiences should be expressed around HIV culture not about our parasite and the damage it’s caused. We are so much more than a body which has been invaded by a virus that some of us can control with medication. We are a small community whose past was erased. We are here, living, breathing, critiquing and hopefully, making community. Otherwise, what are we doing? Assimilating? Becoming “good patients” and perfect children of abusive families? I say, fuck that.
Also, FREE PALESTINE, without a free Palestine, none of us will ever be free.
I will reach out to Alfonso and see if he’s willing to have a chat with me and my friend Eli. Anyone else who’d like to join please get in touch.
On a lighter note here are exciting projects which are in the making or in the process, happening etc.
- Número de Serie partners with artists and designers to improve HIV awareness and other sexual health issues in the UK Since 2018 by Roberto Tovar
- a feature film about people living with HIV by Janos Tedeschi (Switzerland)
- - Participate ! Registration, questions and more janos@positive-life.ch
- Les amies du Patchwork des noms is an association for the preservation of the memory of those who died of HIV/AIDS and my dear friend Pascal Lièvre is an active member!
Many more, these are hand picked because they are in my immediate network.
Some Exhibitions on HIV that made some of the 40th anniversary buzz:
Positive Expressions art HIV and I – Brussels
https://www.bozar.be/en/calendar/positive-expressions-art-hiv-and-i
EXPOSED – Paris
https://palaisdetokyo.com/en/exposition/exposees/
Reconnect and Remember – Liverpool
https://www.tate.org.uk/whats-on/tate-liverpool/reconnect-and-remember
The Seropositive Files – Mexico City
https://aperture.org/editorial/mexico-city-archive-aids-crisis/